CATEGORIES: Awareness | CMT Update

New Strategic Alliance with Rare Disease Report (RDR)

by | May 27, 2015 | 3 comments

rdrWe are excited to announce our new collaboration with Rare Disease Report (RDR) to increase awareness of Charcot-Marie-Tooth (CMT) among the medical community. RDR’s website, e-newsletter, and print publication offers an independent voice for the Rare Disease Community. They strive to bring together medical, scientific, investment, regulatory, and advocate professionals interested in rare diseases and orphan drugs. Since HNF is focused on supporting and developing treatment options for CMT, this collaboration can be groundbreaking towards advancing CMT disease awareness.

Through this new alliance, HNF will expand its outreach to support our new Health Care Provider (HCP) education program, an initiative aimed at identifying expert HCP’s to support the CMT Patient Community. This program provides clinicians with additional tools to care for their patients such as best standard of practice guidelines, information on genetic testing, and patient assistance programs. In addition, HNF preferred HCP’s gain access to other preferred HNF CMT Providers to support the need for accurate diagnosis, supportive treatments, and other educational materials.

With the help of RDR, we will reach an audience of over 60,000 clinicians through their digital and print distribution channels. Throughout the year, RDR will produce video interviews with CMT experts and industry leaders on the diagnosis and management of patients with CMT, as well as provide insight about new research and clinical trials.

James Radke, PhD, Managing Editor of RDR said, “The rare disease community functions best when all parties are part of the conversation. We look forward to working with HNF and provide them with a means to expand their reach into the clinical population.” Click here to view the HNF-RDR Partnership webpage.

As HNF’s Founder & CEO, I firmly believe that it is clear that HCP’s are unaware of CMT, how to recognize the early symptoms, and how to manage this and related inherited neuropathies. HNF plans to change that!

Finally, HNF is asking the community to please reach out via email at [email protected] and share the HCP’s you would like us to be made aware of and why you would like to see them as part of the HCP directory. Please provide name, address, and phone number.

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  1. Alice Suzanne

    I want to take this opportunity to inform HCP readers of the 10 year partnership I had with my doctor in trying to find a reason for the symptoms I was experiencing because I was very fortunate in that my doctor is a physician who is a healer…unlike many who are trained more as mechanics these days. Feel free to contact me if you should wish to ask a question about any aspect of my life as an undiagnosed CMT patient and how we finally found that I suffered from CMT. It is the least I can do to honor my doctor for persisting with me instead of writing me off as a hysterical female.

    • Allison Moore

      Hi Alice,

      We would love to hear more about your experience and your HCP who didn’t give up and was persistent in helping you get to the cause of your symptoms. We would appreciate the HCP contact information to add to the HNF Healthcare Provider Directory.

      Thank you for posting!

  2. jim

    It is an honor to be associated with such a great foundation. Planning to create some great content with HNF to bring awareness of CMT to a larger audience.


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